"The trouble is that once you see it, you can't unsee it. And once you've seen it, keeping quiet, saying nothing, becomes as political an act as speaking out. There is no innocence. Either way, you're accountable."
— Arundhati Roy

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Autism FAQ

On this page, you will find brief overviews of answers to many frequently asked questions about Autism to those who are new to the Autism/Autistic community, or who are interested in learning more about who we are. Here is a list of the questions. You may use CTRL+F or scroll down to find the one you would like to read. The last question gives a list of some print and online resources that may be of use to you. Inclusion of a site on that list does not imply endorsement, agreement, or support of any kind.

What is Autism?

What is the Autism Spectrum?

What is Asperger's Syndrome?

What are sensory issues?

Do Autistic people have empathy?

Who discovered Autism?

What causes Autism?

Is there a cure for Autism?

What treatments, therapies, or interventions are available for Autistic children and adults?

What services or accommodations do Autistic students often need or receive in schools?

What kind of employment opportunities do Autistic people have?

What kind of research is being done about Autism?

What organizations represent people interested in or connected to Autism?

Who comprises the "Autism" or "Autistic" communities?

Who are self-advocates?

How should I refer to people affected by Autism?

What about all this disagreement/arguing/vitriol/tension/hate I see online?

Why do you capitalize Autistic and sometimes capitalize Autism?

What is neurodiversity?

Are Autistic people more likely to be violent or commit violent crimes than non-Autistic people?

Where can I learn more?

1. What is Autism?

Autism is a neurological, pervasive developmental condition. It is a disability. It is usually considered a disorder. It is not a disease. It is a lifelong condition that spans from infancy to adulthood. Autistic people usually share a variety of characteristics, including significant differences in information processing, sensory processing, communication abilities or styles, social skills, and learning styles.

Some Autistic people are non-speaking (and may be called nonverbal). These people cannot use typical speech to communicate. They often use Adaptive and Augmentative Communication (AAC) devices, keyboards/typing, picture cards, whiteboards, or American Sign Language to communicate instead. Some Autistic people begin to develop normal speech in childhood and later regress and lose some or all speech. Other Autistic people develop limited speech. Still other Autistic people never develop speech at all. Other Autistic people are highly verbal and able to communicate using speech. Some Autistic people develop precocious vocabularies in early childhood.

Many Autistic people engage in self-stimulating behaviors called "stims" or "stimming." Stimming can take many forms. Stereotyped stims are hand or arm flapping and rocking, although stimming can also include pacing, other body movements, verbal stims (repeating certain phrases, humming, singing certain songs), or tactile stimming (rubbing a piece of cloth.) Stimming is a natural response to cope with overwhelming emotions, such as joy, anxiety, anger, or sadness. It is also a coping mechanism for sensory overload--more on that with question 4.

Autistic people tend to understand language literally and explicitly. Idioms are difficult for us to understand. We tend to be very truthful or honest, sometimes even to the point of extreme bluntness. For those of us who have high levels of verbal abilities, the social or pragmatic aspect of language is extremely difficult for us to learn -- and it has to be taught. It is not intuitive, automatic, or natural for us. We find it an entire foreign culture. We can easily come across as arrogant, rude, self-centered, or mean, and will rarely be aware of this unless informed directly. Autistic people have great difficulties with nonverbal communication such as facial expressions and body language, and have trouble understanding social subtleties and subtext.

Autistic people also rely heavily on routine, sameness, or being able to expect something to be or occur a certain way. When a routine is altered or disrupted, an Autistic person may have a meltdown, experience severe anxiety, and will have extreme difficulty adapting to the change.

Some Autistic people are able to live independently, complete post-secondary education (such as university or technical training), and obtain and keep meaningful, competitive employment. Other Autistic people can only do these things with supported employment or living services, or extensive supports in the educational setting. Still other Autistic people may need to live in a group home setting or with a family member or full-time caregiver for the rest of their lives. Many Autistic adults are underemployed or unemployed because they do not have access to appropriate and necessary supported employment services.

Some Autistic people are misdiagnosed or given simultaneous diagnoses with various conditions like Attention Deficit Disorder (ADD), Attention Deficit Disorder with Hyperactivity (ADHD), Post-Traumatic Stress Disorder (PTSD), or intellectual disability.

The most important thing to remember about Autism is that each individual is truly an individual. No two Autistic people are alike. At best, we share many similar characters, but we have our own personalities, interests, wishes, hopes, dreams, and fears. We also have different neurological and psychological profiles.

2. What is the Autism Spectrum?

The Autism Spectrum, or Autistic Spectrum, is an informal name used both by clinicians and laypeople to describe the variation in phenotype of Autistic children and adults. It is also used to refer to a set of distinct diagnoses used by clinicians that are considered part of the larger Autism umbrella. Some people dislike this terminology and feel that Autism is not a sliding scale or gradient; other people dislike this terminology because they do not consider most highly verbal Autistics to be truly Autistic. Autism Spectrum Disorder is often abbreviated to ASD.

The American Psychological Association (APA) publishes a Diagnostical and Statistical Manual. The current DSM is the DSM-IV, published in 1994. It considers three conditions to be "Autism Spectrum Disorders." Those conditions are Autistic disorder (also called Kanner's Autism or Classic Autism), Asperger disorder (also called Asperger's Syndrome), and Pervasive Developmental Disorder Not-Otherwise-Specified (PDD-NOS).

Many people consider Rett's Syndrome, Childhood Disintegrative Disorder, and Nonverbal Learning Disorder to be Autism Spectrum Disorders or related to Autism.

Some people use terms like "high functioning autism" and "low functioning autism" to differentiate between Autistic people who have higher speaking abilities and Autistic people who have lower speaking abilities; however, some people object to the use of these terms as demeaning and offensive. Others insist that these terms are necessary to understand the full breadth of the spectrum.

3. What is Asperger's Syndrome?

Asperger's Syndrome is one of the three Autism Spectrum Disorders identified in the DSM-IV. It is also called Asperger Disorder or Asperger's Disorder. (Often, people misspell it Aspberger, Aspburger, or Asberger.) Asperger Disorder was added to the DSM-IV in 1994. The only difference in diagnostic criteria between Asperger's and Autistic Disorder is "no clinically significant delay in development of language." This has usually been understood to mean that people who begin to use speech by a normal age would be diagnosed with Asperger's, whereas people who do not use speech by a normal age would receive an Autistic disorder diagnosis.

In practice, the terms "high functioning autism" and "Asperger's" are used interchangeably, and many people receive both labels. Some people take issue with this distinction, and claim that there is no true validity behind it. They point to the extreme delay in acquisition of social or pragmatic use of language in people with Asperger's as a clinically significant delay in language, thus invalidating the criteria of "no clinically significant delay in language."

In the DSM-5 (the APA changed from Roman numerals to Arabic ones), to be released in 2013 (if I'm not mistaken), the separate three diagnoses of Autistic disorder, Asperger disorder, and PDD-NOS will be removed and replaced with the single diagnosis "Autism spectrum disorder." This proposed change has generated a lot of controversy. Some people are afraid that non-speaking Autistics with lower levels of adaptive functioning skills will be overlooked with the more inclusive criteria, whereas others are afraid that highly verbal Autistics who often have higher levels of adaptive functioning skills will be overlooked with the more inclusive criteria. Others support the change.

4. What are sensory issues?

Sensory issues are caused by Sensory Processing Disorder, formerly called Sensory Integration Disorder. Almost all Autistic people have varying degrees of sensory sensitivity. Sensory issues fall into two primary categories: hypersensitivity and hyposensitivity. Hypersensitivity is when a person is extra-sensitive to certain stimuli; hyposensitivity is when a person seems to be much less affected by certain stimuli. SPD affects all five senses, and it affects everyone differently.

Most Autistic people have aversions to light touch, such as patting the back, stroking hair, or poking, and may reflexively lash out at someone or something making such contact. Many Autistic people have light sensitivity -- to the humming or flickering of fluorescent lights, or to too dim or too bright lighting. Other Autistic people have severe olfactory sensitivity -- and will not eat certain foods or will develop headaches or other problems around certain smells, like cleaning products, wipes, or perfumes.

Too much sensory overstimulation can lead to sensory overload -- a debilitating state in which the affected person is unable to process or respond to any sensory stimuli, including social interaction. I always compare sensory overload to having the infamous "blue screen of death" that Windows PCs get but in my brain--my neurological functions. It is a very painful, inhibiting state. Sensory overload often happens at places like concerts, crowded social events (such as parties or dances), schools, hospitals, or police stations. These sensory issues can make it hard for Autistic children and adults to experience meaningful inclusion.

Some people are better at coping with sensory issues than others. Coping skills are learned, often by trial and error, and sometimes with familial or professional assistance. Many Autistics learn coping skills from one another.

5. Do Autistic people have empathy?

Yes, we do. There was a misconception perpetuated for several decades -- and still fueled by some people today -- that Autistic people are not capable of empathy or empathizing with other people. One of the most common characteristics of Autism is a deficit in the ability to understand nonverbal forms of communication -- including tone or pitch of voice, word choice (such as idioms, colloquialisms, and metaphors), facial expressions, body language, and other subtle communications. Because of that, most Autistic people have a hard time accurately expressing their own thoughts, feelings, or opinions using nonverbal forms of communication. We also have trouble identifying the emotions of others based on subtext or body language.

Therefore, while we have empathy (and a 2009 study showed that Autistic people not only have empathy, but in certain cases, had more empathy on average than non-Autistic people), we may not recognize when to express empathy for someone else, nor will we express it in a way that is expected in the rest of society.

Many Autistic people have a very strong sense of justice -- of right and wrong, and of fairness. Many Autistic people deeply experience sadness, tragedy, and anger at events recounted on the news -- famines, war, genocide, terrorist attacks, or other violent crimes.

6. Who discovered Autism?

American psychiatrist Leo Kanner published a paper called Autistic Disturbances of Affective Contact in 1943 in the English language. In 1944, Austrian pediatrician Hans Asperger published a paper called Die "Autistischen Psychopathen" im Kindesalter (Autistic Psychopathy in Children) in 1944 in the German language. Kanner's research was widely recognized and dominated the field of autism, while Asperger's research, conducted under a Nazi-controlled government during World War II, would not be available in English until the 1980 translation by Lorna Wing.

Later researchers included Bruno Bettelheim, who supported the later disproven theory that mothers caused Autism when they did not love their children, and Bernard Rimland, who railed against Bettelheim and devoted his life to finding a cure for Autism. There was Ivar Lovaas, the clinical psychologist who advocated a behaviorist theory, that would later develop into Applied Behavioral Analysis (ABA), and Eric Schopler, the psychologist who developed the TEACCH program as an alternative to ABA. (More on those later, on question 9.)

7. What causes Autism?

No one knows with certainty the exact cause of Autism. The generally accepted theory is that the cause is complex genetic factors. Multiple studies on twins and families suggest that Autism is genetic, and that multiple genes and parts of several chromosomes are involved in producing phenotypic traits of Autism in an individual.

There are many less credible theories about environmental causes, such as the vaccine-causation hypothesis, which stems from a 1998 paper by Andrew Wakefield. He was a doctor before he was stripped of his license to practice for malpractice. Of the other twelve authors of his paper, eleven recanted their names from the paper claiming a link between the Measles/Mumps/Rubella (MMR) vaccine and Autism. The Lancet, the journal that originally published the paper, published an official retraction fairly recently -- either in late 2010 or early 2011. Other theories were that thimerosal or mercury in vaccines causes Autism. There is no scientifically valid evidence to support this theory.

8. Is there a cure for Autism?

No.

Some people, mostly the parents of Autistic people, advocate very strongly for a cure for Autism, although this also includes some Autistic people. Other people, mostly (but not entirely) Autistic people, advocate very strongly against a cure for Autism. Nevertheless, despite the merits and faults of both sides of this often heated debate, there is no currently known or available "cure" for Autism. People who claim to be able to "cure" Autism are frauds and quacks. Almost all of us, whether or not we want a cure, agree on that.

Some people do, however, claim that it is possible to "recover" from Autism; these people are usually professionals who work with Autistic children and adults. Other people prefer to discuss "passing," in which an Autistic person has learned how to appear more non-Autistic, thus "passing" for normal. The concept of "recovery" generates more controversy than the concept of "passing."

9. What treatments, therapies, or interventions are available for Autistic children and adults?

Oh boy. There is a long, long list of common treatments, therapies, and interventions people often seek or use. Here is a brief and certainly not exhaustive or complete listing:

Speech pathology/therapy

Occupational therapy

Physical therapy

Psychotherapy

Applied Behavioral Analysis

Floortime

Social skills classes

TEACCH

Gluten-free/Casein-free diet

Medications (usually for co-occurring conditions)

Mentoring

Daily Life therapy

10. What services or accommodations do Autistic students often need or receive in schools?

When drafting an Individualized Education Plan (IEP) or 504 plan, consider the student's sensory, social, and communication needs in addition to any specific learning disabilities (or giftedness!) that the student may have. Consider both strengths and weaknesses. Encourage and give concrete tools for developing the student's strengths, and mitigate and accommodate the disability wherever possible.

Allow for sensory breaks if necessary. Allow a student to walk around a room during a test or to stim during potentially stressful situations. Give visual aids, both for schedules and for assignments and class material. Establish and keep a strict routine. Give specific, explicit instructions for assignments both in-class and outside of class. Create measures to prevent and address bullying. Implement a strategy for meaningful inclusion and integration of the student with the mainstream.

11. What kind of employment opportunities do Autistic people have?

Commensurate with an individual's actual abilities and skills, it depends on the level of education the person has as well as the types of support needed during the hiring process or during employment, and whether those supports are available. If an individual receives effective job-coaching, interview coaching, and support in navigating the complex social barriers of "office politics," then he or she will probably do far better than an Autistic person who has not received these same supports.

There are a large number of Autistic people who have advanced degrees but who are unable to obtain or keep a job due to severe deficits in social and communication abilities, or, in some cases, discrimination by the employer on the basis of Autism-related difficulties. The majority of Autistic adults are unemployed for a myriad of reasons.

Autistic people do well when working in a field related to an interest of theirs, not required to participate in a lot of inter-personal interactions, and when given specific, explicit goals or instructions. Autistic people have worked in offices, as professors, in the information technology field, as artists, as teachers, as engineers, as lawyers, as authors, as nonprofit managers, as cashiers, as accountants, as linguists... and more.

12. What kind of research is being done about Autism?

There are three primary types of research: biomedical research into the causes and potential cure for autism, psychological research into the characteristics of Autistic people, and social research into social issues facing Autistic people in the real world, such as housing, education, employment, and inclusion. The vast majority of research falls into the first category, with a significant amount of research in the second category. Very little research is done from the third category. You can learn more from the Academic Autistic Spectrum Partnership In Research and Education, which is partnered with Autistic adults (most of whom are opposed to curing Autism), and the Autism Research Institute, which seeks to find a cure for Autism.

13. What organizations represent people interested in or connected to Autism?

See question 21, the last two bullet points, for a list with links.

14. Who comprises the "Autism" or "Autistic" communities?

The "Autism community" is usually understood to mean anyone affected by or having a professional interest in Autism. That usually means the parents of Autistic people (and other family members, like siblings, or spouses), lay advocates, special education attorneys, researchers, clinicians, policymakers, and Autistic people. Some people make a differentiation between "Autism community" to mean everyone other than Autistic people, and "Autistic community" to mean exclusively Autistic people. The default is to use "Autism community."

15. Who are self-advocates?

Self-advocates are typically Autistic youth and adults. Some self-advocates are non-speaking and use non-traditional methods to communicate; other self-advocates are highly verbal and articulate using typical speech. Some self-advocates have extensive supportive services, whereas others are nearly entirely self-sufficient. Self-advocates have received the gamut of possible diagnoses and other labels, including low-functioning, high-functioning, Autism, Asperger's, and intellectual disability/mental retardation.

16. How should I refer to people affected by Autism?

Depends on whom you ask! Some of us prefer the terminology Autistic person or Autistic, whereas other people prefer to say person with autism. Still others use the more neutral person on the autism spectrum. The philosophies and beliefs behind the arguments for these terms center around the social and attitudinal implications of the language. People who prefer Autistic tend to see Autism as an important and defining aspect of the person's identity, whereas people who prefer person with autism tend to see autism as something that should be mitigated as much as possible and that does not impact the person's identity on that fundamental level.

The most neutral way to refer to people is to say "on the autism spectrum" or "on the spectrum." This avoids a potential inflammatory response.

17. What about all this disagreement/arguing/vitriol/tension/hate I see online?

Unfortunately, there is a lot of vitriol among the members of the Autism community. The "battle lines" usually center along the following debates or controversies:

Those who support a cure for Autism, and those who oppose a cure for Autism

Those who believe vaccines cause Autism, and those who believe vaccines do not cause Autism

Those who support the work of self-advocates to represent Autistics, and those who believe that parents are the only ones who can speak for their Autistic children

Many (but not all) parents of Autistic children (usually non-speaking), and many (but not all) self-advocates

Those who support the use of shock aversives, and those who do not

Those who believe an individual can "recover" from Autism, and those who do not

Those who prefer "evidenced-based" interventions or therapies, and those who prefer non-traditional treatments

These disagreements, which are always personal and deeply emotional for all involved, often result in fighting, nasty exchanges of insults, and hurt feelings on internet forums, blogs, and social networking sites, as well as occasionally in person. No one "side" is entirely culpable for all of the hatred. I have seen other Autistics spew hatred as often as I have seen the parents of Autistic children spew hatred (which is, sadly, a lot.) It is very easy for those of us in the Autism community to be upset, personally offended, and enraged enough to want to go on a personal rampage against the other person.

18. Why do you capitalize Autistic and sometimes capitalize Autism?

I capitalize the word "Autistic" as if it were a proper adjective, for the same reason the Deaf and Blind communities capitalize the respective adjectives "Deaf" and "Blind." We do it for the same reason Black people often capitalize that word. We capitalize it as a proper adjective or noun to represent our community and our identity.

I am inconsistent about capitalizing Autism, and do it on occasion, such as on this page.

19. What is neurodiversity?

Neurodiversity is the idea that certain conditions, including Autism, are natural variations of the human genome, and are not defects that need to be fixed. Neurodiversity says that the ability of an individual should be augmented and supported, and the disability should be mitigated and accommodated. It says that the value or worth of the individual is not less because of Autism, and that Autism is an important and valuable aspect of a person's identity.

Historically speaking, neurodiversity is an extension of the Disability Rights Movement of the 1970s, which advocates the civil rights model of disability -- that the primary and most significant challenges for Autistic or other disabled people are mostly societal problems such as non-inclusion, discrimination, or ableism.

20. Are Autistic people more likely to be violent or commit violent crimes than non-Autistic people?

No. In fact, a recent study showed that not only are Autistic people not more likely to commit a violent crime than non-Autistic people, but that the rate of violence among Autistics is lower than in the general population. Autistic people are also far more likely to be the victims of crime than the perpetrators.

21. Where can I learn more?

To learn more about the history of Autism research, read A History of Autism: Conversations with the Pioneers by Adam Feinstein.

To learn more about the massive increase in Autism diagnoses in recent years, read anthropologist Roy Richard Grinker's Unstrange Minds: Remapping the World of Autism.

To learn more about the vaccine controversy and autism research, read Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure by Paul A. Offit.

To learn more about twice-exceptionals (dually gifted and disabled people), including Autistic twice-exceptionals, read Different Minds by Deirdre V. Lovecky.

To learn more about Asperger's Syndrome, read The Complete Guide to Asperger's Syndrome by Tony Attwood.

To learn more about concerns about Autistic people and law enforcement, read Autism, Advocates and Law Enforcement Professionals: Recognizing and Reducing Risk Situations for People with Autism Spectrum Disorders by former police officer Dennis Debbaudt.

To learn more about relationships and Autistic people, read Against the Odds: A Love Story and Autism, Asperger's, and Sexuality: Puberty and Beyond by Jerry and Mary Newport, two Autistics who married each other; Autism Aspergers: Solving the Relationship Puzzle--A New Developmental Program that Opens the Door to Lifelong Social and Emotional Growth by Steven E. Gutstein; and Strategies for Building Successful Relationships with People on the Autism Spectrum: Let's Relate! by Brian R. King.

To learn more about Autistic girls and women, read Girls Growing Up on the Autism Spectrum: What Parents and Professionals Should Know About the Pre-Teen and Teenage Years by Shana Nichols, Gina Marie Moravcik, and Samara Pulver Tetenbaum, and Aspergirls by Rudy Simone.

To learn more about bullying, read Perfect Targets: Asperger Syndrome and Bullying--Practical Solutions for Surviving the Social World by Rebekah Heinrichs, Asperger Syndrome and Bullying: Strategies and Solutions by Nick Dubin and Michael John Carle, and Exploring Bullying with Adults with Autism and Asperger Syndrome: A Photocopiable Workbook by Anna Tickle and Bettina Stott.

To learn more about Autistic people, read the memoirs of Temple Grandin, Daniel Tammet, Donna Williams, or Liane Holiday-Willey. You can also see a list of and links to blogs by Autistic people on the left-hand side of Autistic Hoya.

To learn more about self-advocacy, read Ask and Tell edited by Autistic special education professor Stephen Mark Shore.

To learn more about employment options and strategies, read Employment for Individuals with Asperger Syndrome or Non-Verbal Learning Disability: Stories and Strategies by Yvona Fast.

To learn more about college options and strategies, read Navigating College: A Handbook on Self Advocacy Written for Autistic Students from Autistic Adults, Students with Asperger Syndrome: A Guide for College Personnel by Lorraine E. Wolf, Ph.D., Jane Thierfeld Brown and Ed.D., Top Tips for Asperger Students: How to Get the Most Out of University and College by Rosemary Martin, Students with High-functioning Autism Going to College: A Guide for Parents by Jane Thierfeld Brown, Lorraine Wolf, Lisa King and Ruth Bork, and Realizing the College Dream With Autism or Asperger Syndrome: A Parent's Guide to Student Success by Ann Palmer.

To read about organizations run by partnership of Autistic people and families and professionals that promote civil rights, see the Autism National Committee (AutCom) and, for a cross-disability organization, TASH.

14 comments:

Lydia, your Introduction to Autism (FAQs of Autism) page is amazing. So thoroughly thought out and written. I am going to send a link to it to all my family members and first cousins. It's the best and most concise description and it covers all the most important issues to know about Autism. Thank you so much for putting this altogether in one place. I expect it took you many hours of reading and thinking and writing to create it.

For minor clarification, Lorna Wing published a paper in 1981, describing case studies for those that were more challenged in life by the condition described by Hans Asperger, and introduced the term "Asperger's syndrome" for the condition. An authoritative English Translation of Asperger's research was not published until 1991, by Uta Frith.

http://en.wikipedia.org/wiki/Lorna_Wing

http://en.wikipedia.org/wiki/Hans_Asperger

Other than that minor clarification, your FAQ's are among the best I have come across. :).

An excellent FAQ, clear and succinct, and admirably neutral. I found this through "Diary of a Mom" and your post about people first language on ASAN (well, the link was on DoaM, your post and the way you expressed yourself made me decide information you wrote was definitely worth reading); aside from being Aspie / ASD, I'm currently an intern at an Independent Living Resource Centre, and we're encouraged to use "people first" language. I've been going through blogs of fellow ASDs and parents of ASD kids over the past several days (and have gone and started a WordPress blog of my own, http://tagaught.net/, because of their examples), and thought that it would be a good idea to pass on the links of some of the posts advocating *against* the use of "people first" language to my co-workers and supervisors, to prompt them to think deeper about it.

If you don't mind, I also have a recommendation regarding your reading list.

Personally, I would add to the "Learn More about Asperger's" the book _All Cats Have Asperger's Syndrome_ by Kathy Hoopman (you can find it easily on Amazon). It's a picture book, but it's well written and very descriptive. It talks about both challenges and abilities, ending on an optimistic note, and the cat pictures are very well matched to what the page is saying, and often humourous (even to us Autistics / ASDs), which makes it charming. The vocabulary does not assume you are an idiot, while being clear enough for a child of... probably about 6-7, I'd guess. (I would have understood earlier, but I was one of those with a precocious vocab very young. And I'm not good at estimating the understanding of children.) I really enjoyed the book, and so has everyone (including a fellow Aspie, my psychologist, and a colleague at the ILRC) that I've shown it to. (My psychologist and the fellow Aspie both declared their intentions to buy a copy for themselves.)

A career as an occupational therapy will offer you a great number of benefits, rewards and other positive factors. From one person to the next, every individual may have a different reason for getting started down this path, or for why they love it as much as they do. Check this out for the details.

awesome! you covered just about everything I could ever think of related to autism. i have a 13 yeard old son who is autistic and i still learn something new every day. i'm also a police detective that has been assigned the task of training my fellow officers in the subjec of "autism and law enforcment". While doing research for my presentation i came across your site. very impressive! thank you!

ps -if you think you might have something to contribute (any opinion, experience or insight) on how the police should interact with an autistic person (child or adult) please feel free to contact me. mauzer43@gmail.com thank you again!

Thank you so much for all this wonderful information. I'm a nanny for 2 beautiful boy's who have autism. I noticed they both tend to pat/cover their ear's from time to time. Any ideas as to why they do this? Please continue to educate us.

Hi! I'm also Autistic, and here are a few possibilities for what might be going on.

-Coping with sensory issues - Sound hypersensitivity can be a part of sensory processing problems. Sometimes the triggers are obvious - sirens, motorcycles, fire alarms, etc., that are just worse for us than they are for most people - and sometimes much less so (one Autistic person I know found the sound of certain words painful, for instance). If you can find any pattern to when this happens and what's going on in the surrounding environment at the time, you might see if there's any sort of sensory trigger here and whether it's avoidable or not.

This might also be a stim (self-stimulatory behavior - though "behavior" here should not be taken to mean that it's a negative thing that needs to be stopped) - a movement, sound or other action that stimulate or calm an Autistic person's senses, either to keep them engaged when there's not enough going on, to help them stay calm if a situation is getting overwhelming, or fulfill other situational needs. This may overlap with sensory issues, and not just sound ones either, so more reason to look out for consistent things that may be stressors. It may also just feel good. One of the kids may have picked it up from the other and found that it worked for them to fulfill the same or a similar need.

Closely related to stims but not quite (as stims can be communicative, especially between Autistic people), it may be communication, either between the two of them or to people around them. This may be especially relevant if the kids you're working with are nonspeaking or entirely nonverbal, or if they're generally speaking/verbal but do this under stressful circumstances.

I'd also wonder about ear problems (e.g., tinnitus, ear wax build up, infection), but that's definitely not a common Autistic thing, and I'd only look into it if there was no other explanation and possibly if one or both of them had already had chronic problems in that sense. I know it's pretty far out there, and I only say that because I had some of that stuff when I was younger, so don't pursue it if it doesn't seem relevant.

The first thing that comes to mind, and probably the most likely, is hearing hypersensitivity and attempts to deal with it. If you can identify any consistent sounds that might be bothersome - obvious ones like motorcycles or sirens, or less obvious ones like particular words - that tend to happen immediately before they do this, that might help to find out if there's a sensory problem here and to what extent it can be dealt with/avoided.

The second possibility is stims (self-stimulatory behavior - "behavior" in this sense should not be taken to mean that they're bad, wrong or should be prevented). Stims are motions, sounds or other activity that an Autistic person engages in, either to keep themselves "grounded" and attentive in a situation because not enough is going on, or to stay calm in an overwhelming situation. There's some overlap with the last possibility, then, though you may also want to pay attention to non-auditory triggers for sensory issues. The ear-patting just might also make them feel good. Also, with both of the kids doing it, it's possible that one learned it from the other, and found that it met their sensory needs in the same or a different way.

Also closely related is that it could be communicative, either between one another or to adults. This would be particularly relevant if they're at this point nonspeaking or entirely nonverbal, or if they speak or communicate in writing generally but not as well under stress.

Lastly - and this is a longshot because this isn't autism-related - I'm wondering if one or both of them might have ear problems (e.g., tinnitus, wax build-up, infections). I only bring it up because I also grew up with this and it was probably more uncomfortable because of my sensory issues, and I wouldn't check into it if 1) there might be another explanation that seems likely and 2) there's no history of any kind of ear problems.

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I believe in spreading good ideas and helping start critical dialogue. If you want to share (or republish, or teach, or link to, or quote, or talk about) my writing, feel free to do so as long as a) you are not making money off of my writing, b) you do not edit, redact, or censor my writing in any way shape or form (excerpts and quotations are fine), c) you leave my name on whatever you republish or share in a prominent location, d) you link back to this website or the specific page it originally came from, and e) you shoot me an email letting me know where/how you shared my stuff. I strongly disprefer fully republished posts, but am not opposed in principle. If you want to share writing from this site that I didn't personally write, shoot me an email so I can contact the appropriate author or put you in touch. If you want to use my writing for any purpose not covered by these conditions (i.e. you will make money off my writing), please ask me and do not assume you have my permission.

Header Image Description

Photo by Kory Otto-Jacobs, taken March 1st, 2013 in Farragut Square Park, Washington, DC, United States, for the National Day of Mourning vigil for disabled people murdered by family members or caregivers. This is an annual event sponsored by the Autistic Self Advocacy Network, the National Council on Independent Living, and the American Association of People with Disabilities, and was originally organized by Zoe Gross in 2012 following the murder of 22-year-old autistic George Hodgins by his mother.

This is a cropped, horizontal banner style black and white photograph depicting one of the vigils and its participants. In the center foreground, there is the back of a person's head with short dark hair; this person is wearing a woolen winter coat with their shoulders and upper-back visible. Facing the camera in the midground, also facing the center-foreground person, are several people wearing winter coats and scarves, many holding cameras, video recorders, or phones. The leftmost person is a dark-skinned woman with long gray frizzy hair; she is wearing a collared woolen dark winter coat. Beside her is a lighter-skinned man with straight dark hair and a neatly trimmed beard and mustache; he is holding a camera or video recorder in his left gloved hand and is also wearing a collared dark winter coat. Beside him and a little behind him is a white person of ambiguous gender wearing a knitted hat and a dark two-toned windbreaker. Beside this person and a little in front of them is a darker-skinned man with braids pulled behind his head, also wearing a woolen dark winter coat, holding a video camera on a tripod. Beside this man is an older Asian woman wearing a light-colored baseball cap under the hood of a light-colored windbreaker. There are two light-skinned hands holding a camera above this woman's head. All of those people are on the viewer's left-hand side and to the left of the woman in the foreground. On the other side, from the left of the woman in the foreground, there is a young white man with light-colored hair falling a little over his face, also wearing a dark coat over a light-colored shirt. He is looking a bit upwards. Beside him is a white woman with medium-dark hair tucked under a felt cap, also wearing a light-colored scarf tucked into her dark-colored woolen winter coat. She is wearing gloves and is holding a large white poster with handwritten mixed-case text that reads "Benjamin Barnhard" on one line, with the second line below it unintelligible. Below the text on her poster is a photograph of a young white man with a darkish background. Beside this woman with the poster is another white woman with medium-colored bangs, wearing a hood/scarf thing wrapped around her head, and a dark-colored double-breasted winter woolen coat. In front of this woman is an older person with very light-colored hair and fair skin, seated. Behind this woman and beside the previous one is another white person with light-medium hair, glasses with a slight tint, and a puffy winter coat. In front of this person is an older white man with slightly wavy hair, also seated. Behind him are two people, one appears to be white and a man and his holding a camera, and then closer to the viewer is a Black man wearing a dark-colored coat, interpreting the speech into ASL. In the background behind all of the people, there are a few naked trees on the viewer's left, a streetlamp near center, and multi-story modernist office buildings to the center and viewer's right.

Boring legal stuff

Links offsite are not to be construed as endorsement or acceptance of the ideas and opinions expressed therein. Nothing that I have written on any part of this website represents in any way any of the official opinions, beliefs, policies, or platforms of any organization, institution, or entity of any kind with which I am now or have at any time been either formally or informally affiliated or associated, nor is any content from this website endorsed, condoned, or approved by any such organization, institution, or entity except where explicitly stated by such an organization, institution, or entity on its own publication or website. I do not warrant that access to this website and its contents will be uninterrupted or error free, nor do I make any warranty as to the results that may be obtained from the use of this website and its contents, or as to the accuracy, reliability, completeness, or contents of any content, information, material, postings, or posting responses found on this website or any links to other sites made available on the website.

If you need to serve process to me for whatever reason (I hope you're not suing me?), you can email the summons/pleading/subpoena/etc. to me as a scanned attachment if your jurisdiction allows electronic service, or to request an address or fax number if your jurisdiction does not.